Introduction

Nearly 3 million new people are diagnosed with cancer every year in the European Union (EU)¹. As a result of progress in early diagnosis, innovation in all treatment modalities and growing access to multidisciplinary cancer care, cancer survival rates have increased significantly, so that there are now almost 10 million people surviving more than five years after cancer diagnosis in Europe^2,3. Due to the extreme heterogeneity of cancer, precisely defining cancer survivors remains difficult and controversial in the cancer community (see Box 1). However, it appears clearly that, in the coming years in Europe, there will be not only more and more disease-free (cured) patients, having successfully completed their cancer therapy, but also increasing numbers of patients affected by cancer in the long term. The latter include those living with advanced or metastatic cancer for many years, experiencing cancer recurrence, intermittent periods of active cancer, or a second cancer⁴. It is therefore time now for European health systems to improve their readiness for the present and future realities of increased cancer survivorship. 

Improvements in cancer survival rates represent a great achievement for health systems and the European cancer community as a whole. However greater attention is now required to ensure cancer patients and survivors, as far as may be possible, are able to benefit from a higher quality of daily life and look forward to a life free of cancer and its effects, both physically and psychologically.

The challenges to address in this respect are significant, as in many cases, this improved survival is associated with a wide range of ongoing, long-lasting issues, either as a consequence of their cancer itself, or of the treatment they receive(d). Importantly, such issues include both psycho-social aspects, such as cancer distress, cancer stigma, professional and financial difficulties, and physical aspects, such as cancer treatment side-effects, long-term chronic pain and cancer complications and comorbidities⁵. In its 2008 conclusions on reducing the burden of cancer, the Council of the European Union invited Member States to “take into account the psycho-social needs of patients and improve the quality of life for cancer patients through support, rehabilitation and palliative care”⁶. However, more than ten years later, there still exist a number of hurdles impeding the access of cancer patients and survivors to the care they need, including poor coordination of care and occurrence of many psychosocial unmet needs⁷.

Additionally, these hurdles come in combination with significant inequalities across Europe. Access of cancer patients and survivors to adapted care and management of the long-term impacts of their cancer and cancer treatment is highly unequal across European countries. This can be evidenced in major discrepancies in both cancer survival rates and cancer patients’ and survivors’ quality of life, and shows the need to ensure equal access to survivorship care across Europe. Furthermore, unequal implementation of regulations protecting cancer patients, survivors and caregivers against financial and professional discrimination across European countries leads to further inequalities in their chances of reintegration into the society.

Collectively, this demands an overall reorientation of cancer systems in Europe. Cancer is not an ‘acute’ disease, but rather a disease of the long term. Cancer systems should therefore move from a cure vs end-of-life care dichotomy to a more patient-centred approach, focused on continuously achieving optimal quality of life throughout the entire cancer journey, and through recognition and incorporation of the concepts of supportive care and survivorship care planning (see Box 2 & Box 3). To help achieve this reorientation, the European Cancer Organisation has established a Survivorship and Quality of Life Network, bringing together healthcare professionals, patients, researchers, academics and others to precisely delineate the challenges to be met and produce recommendations on the most critical policy needs to be addressed⁸.

Our Network proposes the following seven priorities to National Governments, the European Union, WHO Europe and others in order to bring about a paradigm change in how health systems take better account of the Survivorship and Quality of Life challenge in cancer care:

1. Take action on cancer distress
2. Elevate management of pain and other symptoms: core parts of the cancer patient pathway
3. Cancer patients and survivors have sex lives too: recognise sexuality in health system approaches
4. Cancer comorbidities and complications: an ever-growing challenge in need of additional focus
5. Empower cancer patients and survivors: the importance of education and information.
6. Provide cancer patients and survivors with the right to reintegration into the workplace
7. Cancer survivors have a right for their cancer to be forgotten by financial service providers

BOX 1: The Challenge of Defining Cancer Survivors

Currently, there is a lack of consensus on the definition of a “cancer survivor” (or cancer survivorship), with some authorities and stakeholders suggesting that a person becomes a cancer survivor after the diagnosis is confirmed (irrespective of the stage of the disease)⁹, and others suggesting that a person only becomes a cancer survivor after a specified period with no active disease (e.g. five years)¹⁰.

The Survivorship and Quality of Life Network of the European Cancer Organisation has decided not to adopt a specific definition, but to acknowledge the different definitions, which relate to some degree overlapping populations. The rationale for this decision is that the Network wants to focus on the difficulties encountered by such cancer patients as a result of either their cancer and/or their cancer treatment(s), i.e. physical problems and psycho-social needs, including in respect to financial toxicity, and health-related discrimination.

BOX 2: Supportive Care

Supportive care in cancer is defined as the prevention and management of the adverse effects of cancer and its treatment. This includes management of both physical and psychological challenges and side effects across the continuum of the cancer experience from diagnosis, through cancer treatment, to post-treatment care. The concept of supportive care can therefore be seen as an “umbrella”, covering all of the needs of cancer patients in addition to their anticancer therapy and maximising their quality of life. Enhancing rehabilitation, secondary cancer prevention, survivorship, and end-of-life care are all integral to supportive care¹¹.

Beyond medical oncologists and oncology nurses, any organ-related specialist, geriatrician, palliative care clinician, pain specialist, nutritionist, psycho-oncologist, social worker, physiotherapist, nurse or allied health worker who is required to relieve a patient’s symptoms or side effects may be involved in the provision of supportive care in a multidisciplinary way. Among essential components of supportive care is the adoption of a patient-centred approach. A patient-centred approach gives close attention to the provision of relevant care across the entire
cancer timeline, from diagnosis to survival or end-of-life, in a multidimensional and holistic manner, attending to the physical and functional, psychological, social and spiritual well-being of the patients, as well as of their family and carers^12,13.

BOX 3: Survivorship Care Planning

A number of initiatives within the European cancer community have contributed to develop the concept of survivorship care planning, which was further delineated by the recent EU-co-funded Cancer Control Joint Action (CanCon) final report¹⁴.

Each cancer patient should be provided, after the completion of the acute treatment phase, with a survivorship care plan. This plan should contain information regarding both physical and psycho-social impacts of cancer and cancer treatment, and aim at organising their management, as well as the cancer patient’s rehabilitation, through access to relevant services and interventions.

In spite of clear evidence showing the added-value of Survivorship Care Plans for patients, healthcare providers and healthcare systems, there are too few cancer patients securing access to survivorship care planning^{15,16,17,18,19,20,21}.

The provision of individual survivorship plans is a key component of the Organisation of European Cancer Institutes (OECI) Standards for Cancer Centres²². Simultaneously, the European Cancer Organisation’s Essential Requirements for Quality Cancer Care series outline follow-up, support and care for long-term survivorship as fundamental elements of the cancer care pathway²³.

The European Code of Cancer Practice states the right of every cancer patient in Europe to “Receive and discuss with your care team a clear, managed and achievable plan for your survivorship and rehabilitation.”²⁴